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Medicaid Matters for Kids Month - Amarey's Story

Throughout the month of March, Speak Now for Kids is celebrating Medicaid Matters for Kids Month with posts highlighting the importance of Medicaid in children’s access to health care.

You may remember 5-year old Amarey as one of last year’s Speak Now for Kids’ Family Advocacy Day Heroes. With the help of the medical staff at Yale-New Haven Children's Hospital this little fire cracker doesn’t let the fact that she has sickle cell disease affect her positive outlook on life.

Sickle cell is a genetic disease in which the red blood cells are sickle (crescent) shape, making it hard for them to travel through blood vessels to carry oxygen to different organs in the body. When Amarey gets sick, she experiences severe pain in her legs, arms and belly. Her hemoglobin sometimes drops, requiring a blood transfusion, and she may develop a respiratory infection, like acute chest syndrome. In addition to sickle cell disease, Amarey also battles asthma and severe allergies, which requires her to take six daily medications.

We recently caught up with Amarey’s mom, Amarilis, to see how she’s been doing since last June. Unfortunately, due to sickle cell, Amarey has been hospitalized at least five times since her trip to Washington, DC. Just last month, she was also diagnosed with pneumonia and acute chest syndrome.

“I’m not sure where we would be if we did not have Medicaid to cover the ongoing costs of her medical care or the doctors that understand the complexity of sickle cell disease in children,” said Amarilis.

Even with these multiple health issues, Amarey’s smile and laughter continue to entertain everyone lucky enough to be around her. Every day she amazes her family with her accomplishments and her milestones in learning. Until there’s a cure for sickle cell, there’s no doubt that Amarey will continue to live life to the fullest.

Share you own story about how Medicaid has been an important lifeline to your child’s health care. Visit the Stories About Kids Health Care page today.